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» LymeNet Flash » Questions and Discussion » Medical Questions » how do u get dx with CFS?

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Author Topic: how do u get dx with CFS?
lpkayak
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?
Ty

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Lyme? Its complicated. Educate yourself.

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VV
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Use a symptoms checklist:

http://phoenixrising.me/mecfs-basics/dr-bernes-chronic-fatigue-syndrome-mecfsfibromyalgia-symptom-checklist-2

Bring the checklist to a doctor who deals with CFS.

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lpkayak
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Ty...what kind of doctor...my primary doesnt have a clue

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Lyme? Its complicated. Educate yourself.

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lpkayak
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The info on the site listed sx. I have many. Then it listed other diseases that have similar sx. Two of those diseases i am also dx with are lyme and malignancies.

Lyme test is no longer positve by cdc

Oncols say my cancer is gone

So if you gave another disease that causes those sx does that mean you cant be dx with me/cfs?

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Lyme? Its complicated. Educate yourself.

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VV
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CFS is often a diagnosis of exclusion. If you get diagnosed with MS it would overshadow CFS.

I don't know what doctor you should see as I do not know which ones in your area acknowledge CFS. If I were you I'd search for integrative doctors. Try to find information on the web about who specializes in it.

It's tricky because there is not much one can do about treating CFS, but you can run down a list of options to look into: adrenals, thyroid, MTHFR etc.

If you are really serious about CFS diagnosis/treatment and can travel, this might be worth looking into:
http://med.stanford.edu/chronicfatiguesyndrome/

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lpkayak
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Ok so cfs amd me are like fibromyalgia? A group of sx with no known cause or cure?

It is possible any of them can really be lyme disease?

I guess im.confused cuz they seem to be recognized and accepted as real as opposed to lyme

Me has a pretty fancy name...but in reality its just a bunch of sx with no known cause or cure either, right?

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Lyme? Its complicated. Educate yourself.

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geronimog
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I was diagnosed with ME/CFS in 2006, according to the Canadian Consensus Criteria. I'd been sick with 'whatever' since early childhood. In 2006 I developed post-exertional malaise. To me, and most in the ME/CFS community, this is the cardinal symptom. Is it necessary for a diagnosis? That's a matter that can be debated. If you went on Phoenix Rising claiming to have ME but not PEM I think that would arouse doubt. I'm guessing 99% of that community has PEM as a core symptom.

Fukuda was the original criteria. This was followed by the CCC. Now there's the ICC. And guess what, they're working on another.

Read the following article for an explanation of the issue.
http://www.cortjohnson.org/blog/2014/12/25/new-era-chronic-fatigue-syndrome-definition/

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TF
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Yes, CFS is like fibromyalgia. It is a group of symptoms with no known cause or cure.

Many people believe that lyme is the cause and also the correct diagnosis.

But, I guess it is also possible that there are cases of fibro and CFS that are NOT caused by lyme.

In my experience, if the fibro continues to get worse and worse, it is lyme disease. If it stays at a milder level, it is generally depression or lack of restorative sleep. Sleep deprivation can induce fibromyalgia.

Regarding the CFS, I believe it is often lyme disease.

So, I wouldn't spend much time looking into these 2 conditions.

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lpkayak
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I guess what has my attention is the post exercise malaise

This has come out as major sx for me

I am ex athlete and always could depend on my body. Now i cant. It is so hard for me to understand how working a muscle can not make it stronger

And not only does exercise not make me physically stronger...i cant think either

Bu since there really is no tx i agree i should focus on lyme tx

I just remembered today the last time i was riding and kayaking was four years ago when i lived in nj and was doing buhner tea

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Lyme? Its complicated. Educate yourself.

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WPinVA
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My LLMD used to specialize in CFS. Then he realized that many of his CFS sufferers really had Lyme and co. and that's how he became an LLMD. His background is as a primary.

I already knew I had Lyme when I went to him (I was actually CDC-positive). I recall him saying that I also met the clinical criteria for a dx of CFS and fibromyalgia as well. Those later two were both caused by Lyme, so they were treated by treating the Lyme. Although since fatigue has always been my greatest problem, it was good that he has a background in it, and energy-supporting supplements have often been a part of my protocol.

My opinion is that if you know you had/have Lyme, then it would be very unlikely if your CFS symptoms were not connected to the Lyme. CFS is a catchall for when they don't know what is causing the problem. Sounds like you do know what is causing it.

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lpkayak
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Yeah...i always said fibro is just un dx lyme. Sounds like the others are too but this exercise intolerance is getting worse

I do kniw when i take stuff that helps glutathione i start to have more energy

I think i was in the same place as when i funaly tested pos for lyme, babs and erlic after 15 yrs of mis dx

I was sohappy to have a labe l on it and know what i was fighting

It wasnt a happy ending tho. Just the beginning of a long, hard war where all the rues keep changing

I was thinking if it had an accepted and respected name i could fight it and get better

Im just going backwards thinking that way...i dont usually do that-im really exhausted

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Lyme? Its complicated. Educate yourself.

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WPinVA
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Maybe you have an accumulation of biotoxins? Just a thought, as I know I do, and I think it is causing a lot of my remaining issues.
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Razzle
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If you've been treated for cancer, there is some damage that takes a long time to heal from the medications, radiation & the cancer itself.

If you've had Lyme chronically, this impairs the body's ability to repair damage (Lyme is attracted to sites of injury; exercise causes micro-tears in the muscles, which ordinarily heal as stronger muscle, but with Lyme, that may not happen).

If you've taken statin drugs and had a bad reaction, this drug damages mitochondria.

As one gets older, one's mitochondria become less able to regenerate.

The methylation cycle sits in the inter-membrane space of the mitochondria, and plays a role in energy metabolism. Impaired methylation also leads to impaired energy metabolism and impaired ability of mitochondria to regenerate themselves.

Mitochondria are central to energy metabolism (production of energy from food & oxygen). If they are no longer functioning at peak performance, you'll likely experience PEM.

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-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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rosiegeorge
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Wp In VA I tried to pm but your mailbox is full.

I just moved to nc from nj and still going Back to nj for my llmd. But va is much closer.

Right now my lyme & co are under control but I'm experiencing really bad chronic fatigue. I rarely get out of most days and haven't left my house in months. Not yet diagnosed though. I think your dr would help me out. Can you pm me their info.

I'm going to ask my dr for a prescription for Ldn. I heard that can help with fatigue and someone also reccomended cbd oil.

Anyone have reccomendations for CFS remedies as a residual effect from lyme??

Thanks a lot!!

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Razzle
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Look into methylation and mitochondrial support.

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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WPinVA
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Rosie, I sent you a PM. With what you describe, are you sure your lyme and co are under control?

I would also look into whether adrenal fatigue is an issue.

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LisaK
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I got this dx from my primary and my lyme dr

I found from talking to other ppl, some dx it easily and others do not.

__

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Catgirl
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Rosiegeorge, chronic fatigue can also be proto (FL1953). It's major fatigue.

Lpkayak, exercise fatigue can be from proto.

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--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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VV
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lpkayak,

Stanford may have found a reliable objective marker to diagnose some CFS:

https://med.stanford.edu/news/all-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html

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Marz
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I had very high EBV titers when I got checked by LLMD in 2006. I brought to internist and he asked when I'd had mono. Never to my knowledge. He said I'd had a bad case judging from the test.

Later I learned about crimson crescent in pharynx as an indicator of CFS. I still have it.

Have you checked your throat kayak?

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lpkayak
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V v...ty

No...havent checkrd throat...dont know how i could do that...i can hardly see my nose

Lenny...i dont know what you have gone thru and im.sorry. but some of us are real. I have met quite a few from here and they are real. Mods shut down illegal selling etc when they can

Im sorry for what is happening

That said problem.ppl and trouble makers do show up and sometimes it takes a while to get rid of them

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Lyme? Its complicated. Educate yourself.

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Marz
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Heres an old posr on crimson crescents and cfs

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/27439?

I use a very small LED flashlight and a hand mirror.

You can google for an image to figure out where to look.

Curious toknow if you find any???!!!

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lpkayak
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Maybe a friend will look

I thought tht link would have a pic but it didnt

Where can i see a pic

Whst am.i looking for...can u describe it?

I can ask a friend to look

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Lyme? Its complicated. Educate yourself.

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Marz
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Heres where to look

http://www.google.com/search?hl=en&redir_esc=&client=ms-android-att-us&source=android-browser-suggest&v=141400000&qsubts=1420504269587&q=crimson+crescents+in+throat

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Marz
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And a link for cfs

http://www.immunesupport.com/93sum007.htm

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lpkayak
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So do u have to have a sore throat to have cfs? Im yrying to take pics of my throat but havent done it right yet

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Lyme? Its complicated. Educate yourself.

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Keebler
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-
"Crimson crescents" are not just with CFS, though. I have them. Once lyme was diagnosed, the CFS diagnoses fell away.

"Crimson Crescents" can have multiple causes.

Yet, for what it's worth, most doctors will look right past them. My throat was on fire for decades. So many doctors, dozens over the years just looked and said my throat was fine.

They were looking PAST the raw, red sides where after reading about the "crimson crescents" later in CFS articles -- I could identify.

I would like to think most doctors now might give this consideration but, remember, 9 out of 10 doctors will not. Another reason why, if you seek out a CFS diagnosis, that you find a true expert - and one who won't just slap another label on you but also seek out specific causes.
-

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Pam08
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I just wanted to comment as well because I was actually diagnosed with CFS for 7 years before I was diagnosed with Lyme disease.

I can tell you first hand that CFS/ME is NOT an accepted or respected disease/diagnosis. People (including a lot of doctors) think that you are just lazy or depressed or making it up all together. OR they think that all you are is just tired all the time and that it is no big deal. They don't realize that it is MUCH more than that and there are a ton of other symptoms that go along with it.

Fibromyalgia may be a bit more accepted these days since there have been commercials advertising medication for it. But not sure how much more accepted it is now than it used to be since I haven't spoken to those with Fibro recently.

Basically Fibro and CFS are the same thing. The only difference was that if you had pain as a part of your illness then you were diagnosed with Fibro and if you didn't have pain then you were diagnosed with CFS.

I have to say that when I was finally diagnosed with Lyme Disease my illness was much more accepted by everyone (including doctors) then when I was dealing with a diagnoses of CFS. I feel like I was/have been treated with more respect and taken more seriously since being diagnosed with Lyme.

So if you are looking for a more accepted/respected diagnosis CFS is not going to help you out.

Also, even though a lot of cases of Lyme Disease are misdiagnosed as CFS...I do think there is an illness (separate from lyme disease) that causes CFS in some people even if they don't know what that is yet.

I tested CDC positive for Lyme Disease and have been treating it for 6 years with NO success. Unfortunately I don't feel much different today then I did before treating. My Lyme tests all came back negative several months ago even after going off of the ABX but I don't feel better (I know that negative lyme tests don't mean a whole lot but mine were positive before).

So at this point I think it is possible that I could actually have CFS (whatever the cause of that is). I just haven't responded to any Lyme and coinfection treatments (antibiotics, naturals etc) so something else is clearly going on. I actually stopped all of my ABX on April 3, 2014 and I haven't felt any different without them then I did when I was taking them. I have continued doing natural treatments but unfortunately those don't seem to be working for me either.

I even had a highly respected Lyme doctor agree that there might be something else causing me to be ill (aside from the usual suspects that go along with lyme ie...adrenals, methylation, parasites, celiac etc etc since I have explored all of those avenues as well).

Anyways...I just wanted to throw my two cents in since I have some experience with all of this. I wouldn't be so quick to write off all cases of CFS or Fibro as Lyme Disease since there are plenty of people in those online groups that didn't respond to Lyme treatment. Not sure what to make of people like me who are non-responders.

I also wouldn't look to a CFS diagnoses as a way for your illness to be more respected or accepted because that definitely hasn't been my experience.

Take Care!

[ 01-06-2015, 02:22 AM: Message edited by: Pam08 ]

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Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting.

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Pam08
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OH and I also wanted to add that like Marz I too had very high levels of EBV when I was tested for it twice during in the first 6 months that I became ill.

There are different EBV tests (some that show current infection, recent infection and past infection) and mine were showing that I had just recently been infected.

After they tested me for all sorts of other things and couldn't figure out why I was ill they decided that I had likely suffered from an recent acute EBV infection that I never recovered from. From there I was diagnosed with Post Viral Fatigue Syndrome AKA Chronic Fatigue Syndrome.

No one checked my EBV levels again after the CFS diagnoses until I tested positive for Lyme 7 years later and started seeing an LLMD. My LLMD periodically checked my EBV levels but in the last 6 years those haven't been an issue. Only one of the levels ever comes back slightly elevated or borderline and that is the one that indicates a past infection.

So...not really sure what to make of any of this but over the years many people have suggested a link between EBV and CFS although no one has ever been able to prove that correlation.

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Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting.

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ukcarry
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My experience is very like Pam08's: I was first diagnosed with ME/CFS by exclusion by my own doctor and also satisfied the requirements of several doctors conducting small trials for research, but in 2006/7 I was diagnosed with Lyme and co.

At first I was relieved to at last have something more 'tangible' to research and try treatments for, but over time I have come to regard myself as still having ME/ CFS in the sense that it is a collection of symptoms.....in my case (and probably many others), caused at least partially by Lyme.

It is evident though that many people with Lyme do not have crushing fatigue, for example and I have often thought that a useful line of research would be to look at these people in depth to try to analyse what is different in their constitutions and infection collection.

I don't think the sore throat symptom is a deal-breaker when it comes to an ME/CFS diagnosis. I had lots of sore throats, tender glands, flu-like feelings earlier on in my illness, but less so most of the time now unless I pick up other bugs or have detox crises. I think that it to do with the immune system changing its type of response over time (Paul Cheney wrote a lot about this).

I had high EBV levels too, but apparently, so does quite a large percentage of the population, both healthy and ill, so it is hard to draw conclusions there. We all have amassed collections of multiple bacterial, viral and fungal infections.

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LisaK
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MARZ- your mailbox is full. I cannot respond until you delete some

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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LymeCFIDSMCS
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I think my prior message was deleted and I'm not sure why -- I'd try Dr. E. in NYC if I were you (ME/CFS doc).

There was a study of spinal fluids that came out about 3 yrs ago that found distinct differences in Lyme spinal markers vs. CFS. I have never bought the "Lyme is CFS" rap b/c I got ME/CFS first, and much later Lyme and co's, and the treatment for Lyme and co's did not even touch my existing ME/CFS symptoms.

This does not mean there aren't other pathogens involved. See Kent Heckenlively and Judy Mikovits book Plague.

Dr. Paul Cheney as someone else just said wrote/lectured about the three phases of ME/CFS, and the symptoms change with each one -- it's probably online.

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kim812
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I am like Pam08 as I have been treating Lyme/Bartonella for 8 years off and on. I still have the original symptoms I started with back in 2004.
No matter what I have taken for abx/herbals those symptoms never go away. In fact the nerve pain in my feet and calves has become worse over the years.

I also saw a well know Lyme doctor in NY who was unable to get me well. To me that means I don't have Lyme and maybe never did. They kind of gave up on me and wanted me to see a Chinese doctor who made his own herbals.

I have seen the well known CFS doctor in Boston also and he said he couldn't definitely diagnose me with CFS as I didn't meet the CDC criteria. So I am really in limbo...

I do have PEM which is mostly caused by mental stress such as working/socializing etc. but I can easily do physical activities which many with CFS can't. I always have a nagging fatigue which never goes away.

Even though I had high EBV titers they did not indicate a recent infection and I have never had mono although my son did at one time.

If you go on the phoenix rising sight and read posts you will realize that many of them have different symptoms than Lyme and other issues that Lyme doesn't cause. I have read tons of stuff on Lyme sights and CFS sights and I can tell you that I have certain symptoms of both.

I can't really offer you any advice since I have been to the top Lyme doctor and the top CFS doctor and neither would diagnose me with either illness but yet I am still sick 10 years later...

Posts: 343 | From North Carolina | Registered: Oct 2008  |  IP: Logged | Report this post to a Moderator
geronimog
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Pam08, ME/CFS may not be respected the way lung cancer is but it is, for the most part, an internationally recognized condition.

I'm receiving government aid as a result of being diagnosed with ME/CFS (Canadian Consensus Criteria). Even a CDC positive for borrelia and babesia duncani positive be FISH doesn't register with the doctors up here in Canada. I've learned "Chronic Lyme" is far more controversial. Though I've noticed it goes over better with lay people I might tell. So the public mostly buys Lyme because it has a cause. They don't understand the objection scientists have to it. The public is more likely to suggest it's all in your head if you don't have a pathogen to point to.

I think you have it backwards with fibromyalgia and ME/CFS. Paul Cheney recognizes there are overlaps between the two but states the following:
-95% of ME/CFS patients have pain
-the difference between ME/CFS and fibromyalgia patients is the latter improves with exercise, as they don't have PEM

If you have PEM you don't have fibromyalgia, you have ME/CFS.

I think it will turn out there are many ways to develop PEM and hence, ME/CFS. Dr Peterson has cured a subset of Parvo B19 patients with IVIG; Montoya has successfully treated a subset with high titres of herpes 5,6, or 7 using Valcyte (though they tend to relapse); Shoemaker has cured people of PEM by treating biotoxin illness.

It may turn out many of us carry a retrovirus like Mikovits suggests that makes it really difficult to fight off these other infections, Lyme and co included. Dr B was keen that this was the case. However it's important to remember that, according to Mikovits, 6% of the population carries these viruses. Maybe some variants are innocuous, but then maybe only certain people get sick, maybe because there are too many other stressors that end up breaking down the system. And maybe these retroviruses don't exist.

For those who've treated the hell out of Lyme and not improved I'd look to some of these other stressors, particularly biotoxins. Dr H in a recent interview speaks about the 5-7% that would not improve, regardless of what he'd do. Now he's finding these folks test positive for mold toxins in the urine. So this suggests either a Shoemaker or Brewer explanation. Remember Dr Brewer found this stuff in the urine of 93% of ME/CFS patients' urine and 0% of controls. This was probably the most intriguing study conducted on this population over the last 5 years.

Mold toxins are definitely a factor for me and I could never have imagined this, but had I not moved from the place I was living improvements would not have been possible.

I've noticed most with Lyme who also have PEM don't get better with antibiotics alone, that the prognosis is much worse. I'm pretty sure this is usually due to biotoxins. There are symptoms that can differentiate this from the case of viral perpetuation of the condition. If you've environmental symptoms/illness and/or the symptoms Shoemaker talks about, think biotoxins; if you don't but have crushing fatigue, as well as suffered a sudden onset, think virus. Though I admit this is not perfect.

[ 01-10-2015, 12:44 PM: Message edited by: geronimog ]

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Pam08
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Hmmm...it sounds like the situation is a bit different up in Canada then it is in the US. My experience here in the US has been that CFS is definitely more controversial than Chronic Lyme.

Where I live Lyme is prevalent and I don't think that I have had any doctors bat an eye at my diagnosis. I have even had a couple doctors (that weren't LLMD's) tell me that they sympathize with my situation...one having a friend going through it as well.

I can not say the same about a CFS diagnosis. From my experience with a CFS diagnosis in the US I can tell you that it is generally not well received. And it wasn't just me either. It seemed like everyone else on the support group sites was having the same experience. They were not being taken seriously by people...including the doctors they had seen.

So it sounds like CFS is taken more seriously up in Canada then it is down here in the US. It has certainly been my experience that Lyme is the more respected diagnosis amongst the doctors and the public.

Also...I guess my explanation of the difference between CFS and Fibro is was a little too simplified. I shouldn't have said those with no pain are diagnosed with CFS and those with pain are diagnosed with Fibro. A lot of people with CFS do have some pain as a part of their illness but it isn't their main symptom. The fatigue is a bigger issue for them.

What I should have said is that they both can have pain and fatigue BUT if the fatigue is the predominant symptom then the person is usually diagnosed with CFS. But if wide spread pain is the predominant symptom then the person is usually diagnosed with Fibro.

If you google CFS vs Fibromyalgia you will see that is usually how doctors determine their diagnosis. I am sure doctors who specialize in CFS or Fibro may also look for other distinctions but most other doctors differentiate the two by the fatigue or pain level.

[ 01-10-2015, 03:10 AM: Message edited by: Pam08 ]

--------------------
Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting.

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